I am new to this so I am not sure I chose the proper topic because my symptoms span beyond the syncope. I posted in another forum and based on my post someone suggested I post here. I have many things going on and am feeling very frustrated that I have no clear diagnosis so I do not know what to do about it. I am 26 years old. I am a full-time student and work part-time. Here is my previous post:
I am not really sure where to turn anymore. Sorry, this will probably be a long one. I just want to know what is happening to me. I have been seeing doctors on and off for four years. I have been passing out since I was 2 or 3 years old. I estimate that I have passed out over 200 times in my life. When I was a child I had low blood sugar so it was attributed to that. In 2006 I passed out in public and was hospitalized. I passed out while on the monitors and learned that my heart stops when I pass out. They saw up to an 8-second pause. It starts back up on its own. I have been told that it looks like I'm having a seizure when I pass out but a doctor told me that it's actually not a seizure, it's my nervous system shutting down. I was diagnosed with vasovagal (neurocardiogenic) syncope, although I am not sure if someone's heart stopping is part of vasovagal syncope. I wonder about what may be happening to my brain and body for it to shut down so often. My main daily issues are fatigue/exhaustion and nausea.
I am almost always tired or exhausted and nauseous. I have also started having more difficulty swallowing food and getting a good enough breath without making an effort. I learned from an echocardiogram recently that there is fluid building around my heart (pericardial effusion) but I don't know what it is or why it's happening. I was also told I have a decreased systolic function. Two and a half years ago it was at 65% and now it is at 50%. I am told that is at the lower end of normal but not appropriate for someone my age. I'll be seeing the heart rhythm specialist soon.
I have seen two endocrinologists but moved and did not get to continue seeing the second one. One thought I have PCOS, one did not. I have very high DHEA. I am not sure if those things are relevant. I was referred to a rheumatologist and found out that I do not have a rheumatoid disorder. I have terrible GERD, which I am told may be why I am having trouble swallowing and breathing and have a regularly occurring cough and nausea. I also found out from a barium swallow that when I swallow any texture of food or water that it does not continue down my esophagus to my stomach. Some of it lags behind and stays in my esophagus. They said that is probably why I feel full almost right after I begin eating.
I have begun having problems with my circulation. I can't stand in one position for long without getting queasy. I have to keep moving or sit. I have a manual car. Often during or after driving now my toes start getting tingly and going numb, I think from pushing on the clutch with my foot. That never used to happen. I'm also getting tingly and numb feet and lower legs (up through my calf) sometimes, dependent on the way that I sit.
I've also been having difficulty with my balance. If I look up or to the side too quickly I begin to fall over, not always but I am noticing it on a regular basis. I sometimes have difficulty with my vision, things are more blurry and out of focus, usually coinciding with slowed response time. It's hard for me to think of words sometimes or remember what I was just saying or react. When I feel like this I don't drive, just to be safe.
My mom has had her gal bladder removed and has chronic pancreatitis or something like it right now. Heart problems run in her side of the family but I have been told that the structure of my heart is normal. I have the fluid around my heart, the decreased systolic function, and sinus arrhythmias, sometimes bradycardia, sometimes tachycardia, sometimes off-beat. They put a heart holter on me for 24 hours recently and the results said that I had tachycardia for about 45% of the 22-hour period. I am not exactly sure what all information to include here. Most of my lab work comes back normal. I have been tested and found negative for lupus, diabetes, hepatitis, HIV, and pregnancy. If anyone has any thoughts on this I would really love to hear them. I have researched everything I can think of to research. I have gone to many different doctors with the answer of yes, something is wrong but without any definitive help. I just want to know what's happening so I can do what's possible to help myself lead a healthy and, hopefully, long life.
Thank you for bumping this up Eve! I hadn't seen this message, the community was busy this weekend!
So sorry you haven't received a response yet MelboSun. Are you currently being treated for your Vasovagal Syncope? If I may ask, where are you being seen? There are doctors that specialize in Dysautonomia.
I am not sure about the fluid around your heart and the decreased systolic function, but I would like to address your neurologic symptoms.
The swallowing issues (and other digestive problems), tingling, numbness, balance problems ... all of that may be indicative of neuropathy, be it autonomic, sensory, and/or motor. This information may be of help:
Well, Heiferly beat me to the neuropathy links :) so I'll ask what all was done to rule out autoimmune? A lot of your symptoms are similar to mine. My heart does occassionally decided to stop, so yes, that can be part of dysautonomia. I had Sjogren's for 13.5 years before it was diagnosed, and during that time, my immune system was attacking my peripheral nerves. There are a couple different autoimmune diseases that don't always show up positive in bloodwork. Have you had ANY indications of autoimmune (elevated Sed rate, elevated CRP - both inflammation markers, positive ANA)? There are a lot of causes of neuropathy, so check out the links listed above. Most, maybe all, your symptoms could be from neuropathy.
Thank you all so much for your responses and thank you, Evo, for bumping my post. I am new to forums. I will most definitely be checking out the links you all offered. I am not being treated for the vasovagal syncope. I was given some techniques, like squeezing my fists, to help keep me from passing out. I was put on a Beta Blocker, Atenolol, early this year but it caused me to lose my balance much more and I felt cold all the time so I stopped taking it. Otherwise, I've just been told to add extra salt to my diet. Until reading this forum I did not realize how many other things could be associated with vasovagal syncope. I just thought it was the reason for my passing out.
I was in the military so I am being seen at the VA hospital. I feel like the doctors are only dealing with me because I am insisting on it but I do not have medical insurance so that is where I go. I am not sure what all bloodwork was done but I know I had negative ANA. My new primary care doctor just offered me anti-anxiety medication upon my first visit with her but I would much rather see a dysautonomia doctor (would that be a neurologist?) before considering anything like that, especially since I do not feel I have any problems with anxiety.
I believe I have had a cranial CT but, if so, it was a few years ago and must have come back normal because I never heard anything new about it. I have had an upper endoscopy because of the GERD symptoms but not a gastric emptying. I am very interested in finding out about seeing specialists in an academic hospital but know nothing about how to take advantage of that opportunity. You all have brought up many things for me to research now. Thank you again, so much.
Well, they could certainly be doing more for you in terms of treatment than telling you to salt load and use countermaneuvers if you're still having syncope--and I don't mean just offering you anxiety meds! You may want to browse through our treatments page (keeping in mind that you're looking for ones that apply to syncope and your other specific symptoms, as these treatments cover the gamut of dysautonomia). Most commonly patients with vasovagal syncope are tried on the medications Midodrine and/or Florinef (aka fludrocortisone) first, though there are other things that can be tried if those aren't helpful or well tolerated due to side effects. (Pardon our dust; this page is a work in progress.)
If you need help figuring out where the best hospital is close to you and you don't mind disclosing your general whereabouts, you can either post that here or send a private message to me by clicking on my username and I can look up the teaching hospitals in your area and also double-check if there are any autonomic specialists that happen to be in your area (that tends to be hit-or-miss).
Thank you, Heiferly. I live in San Diego, CA. I researched a little last night and found a few training hospitals, Scripps Green Hospital in La Jolla and two UCSD Medical Centers. I did not find anything relating to vasovagal syncope or dysautonomia doctors but I am definitely open to the help in research, especially since you have more experience and may notice things I missed. I saw from the links halbashes added that there are some dysautonomia doctors in the LA area. If there are none in San Diego I will contact those doctors to find out if they would see me and how much it would cost.
Most hospitals are required to provide free necessary medical care to those with insufficient income, but they generally don't like to tell anyone that. Knowing how the military pays, you may qualify, so ask if they have any patient assistance or "HCAP" programs. Individual doctors' offices are not required to do this, but some are nice and have some sort of program. If you don't get anywhere, ask if there is a social worker there that you can talk to, or sometimes people in the billing department know about these programs.
Frisca L. Yan-Go, M.D.
Department of Neurology
710 Westwood Plaza
Los Angeles, CA 90095
Multiple System Atrophy (Shy-Drager Syndrome)
Autonomic Failure (PAF, secondary Autonomic Failures)
Orthostatic Intolerance (POTS, mitral valve prolapse)
Sleep Distrubance and Autonomic Disorders
I am still trying to get through to different departments at UCLA to find out how their autonomic testing capabilities compare to the hospitals here around the midwest/east coast. My phone calls have been temporarily stymied by their lunch break and the time difference. D'oh.
Aww, I really try you guys. I figured since both Weney and Melbo were looking in that area, I better really check this out as thoroughly as I could. Do unto others as you would have them do unto you, right? It's easier for me to slog through this on the phone because I know "the lingo" ... I can't imagine trying to do this back when I was still trying to get things sorted out myself so how can I expect others to do the same?
Here's where I'm at:
-Cardiology does tilt WITH norepinephrine levels (yay!) and is comfortable evaluating syncope and has everything you can think of in terms of regular cardiology testing (echo, holter, EKG, cath lab, stress, etc., etc., ad nauseum). That's good. When I got to asking about autonomic/dysauto/POTS (and yes, I tried it out long ways "postural orthostatic tachycardia syndrome" too) they went a little "duh" on me and faltered over "well, uh, ... we do tachycardia" so I knew they were lost. I backed up and explained it was a discipline where cardiology and neurology intersected and Mayo and Cleveland Clinic often handled it jointly between the two disciplines at which point they heaved a sigh of relief and passed me off to neuro, gladly giving me another number to call. (I wasn't particularly encouraged though that they had no familiarity--how can you properly read a tilt to FIND dysauto if you've never heard of it; but you know, I wasn't talking to an actual doctor so who knows?)
-First neuro number I was given: "Oh we have EVERYTHING at UCLA." She simply scoffed at the notion that I would even bother to ask. She'd never heard of it, but if Mayo and Cleveland had it, she was SURE they had a QSART, whatever that was. Just to prove her point, she put a passing neurologist on the phone to explain to me how much of EVERYTHING they had. "Yes, I'm just calling to find out the extent of your autonomic testing facilities at UCLA; can you do QSART ... quantitative sudomotor--" "You need to call the clinic and ask them. We don't do anything here." Which is sort of an odd reply because even if you don't DO it there, doesn't someone have to *order* the test, doesn't the neurology department have to be *aware* of the availability of the test in order to refer patients to have it when appropriate? But I digress ... on to my next phone call:
-The clinic (which appears to be one of the two phone numbers for Dr. Yan-Go, so I guess I was getting closer): "I've never heard of it. But maybe I just don't know. There is one doctor here who specializes in autonomic." "Yes, Dr. Yan-Go. But this one test, for example, the hemodynamic/blood volume is a nuclear medicine test that requires a huge machine that I guarantee Dr. Yan-Go isn't concealing in a closet in the back of a patient room." "We can try calling nuclear medicine." That was a dead end as the first person we got connected to never heard of it and my cell dropped the call on the second person. I called back and asked if there was a time I could speak directly to Dr. Yan-Go; I presume she knows what tests she actually orders. :-p She's available at her other office at the sleep clinic tomorrow and Friday. I'll do what I can to try to reach her.
Honestly, I think the answer is going to be a confirmation that there are no autonomic testing facilities on the west coast. I had really been getting my hopes up because it seems so ludicrous to me that Vanderbilt, Mayo, Cleveland Clinic, and the ones in NYC are the only options in the US. What is the rest of the country supposed to do if you want to get a QSART, TST, hemodynamic, or whatever? Maybe I need to scour the research literature more and look for studies that have been done with autonomic equipment in other states. Not by any stretch of the imagination that everyone needs these tests, but what are you supposed to do if you do? This is so irritating, especially because I'm talking to neurologists at the third best hospital in the country who act like I'm from the moon when I start talking about dysautonomia. Ugh!!
W..O..W.. Heiferly, I give a third for your angelic qualities. Thank you so much for the help you are providing me and, I am sure, others. I can do research online but, as you said, I do not know as much of the terminology since I am just beginning to learn about it. Also, I am a student and work so I often cannot make these calls during working hours. I am seeing a rhythm specialist (cardiology) tomorrow and hoping he or she will refer me to a neurologist, although I do not believe they have a dysautonomia specialist. Now that I think about it I will call the Patient Advocate at the hospital to ask about that. I will most definitely "pass it on" when I am the one with the information that could help someone else.
Thank you for the information about low-income medical care and for the HCAP acronym. It is a helpful reference point to begin research. If it turns out that UCLA tests and treats dysautonomia patients I will definitely be looking into their payment options and patient representatives. LA is only two hours from here so it would be doable.
I wonder if Mayo in Arizona will ever pick this up. It seems like something they might be able to do to service the west coast a bit and maybe some information & consulting can be snagged from Minnisooota, don't ya' know.
I talked to a secretary at Dr. Yan-Go's second office today and they said she isn't there today but I can reach her between 9 and 11 tomorrow. Now all I need to do is figure out what that translates to in MY time zone and ... drag myself out of bed early ... right? It's early over there not later, yes? Uh oh, brain fog+time zones=better consult google. :-p
Yeah, seriously, I wish both Mayo and Cleveland Clinic would step up the game in their other states' hospitals and get autonomic clinics there, too. Maybe we should just find out how much each of the machines cost and start taking up collections for them. We could put little coin jars in gas stations: a picture on the front of a person passed out on the floor, "Help! She's fainted and she can't get up ... until Mayo gets enough money for a QSART."
Weney3777 got the verdict on the facilities at UCLA from an email from Dr. Yan-Go and asked me to post it here on her behalf:
"You can do tilt table with cardiologist in [city where Weney3777 lives].
Currently I do not have a full autonomic Lab .I can do second opinion consult
if you bring ALL your records with you.
Frisca L. Yan-Go, MD
Professor of Neurology"
Thank you. I saw a heart rhythm specialist today who put me on fludrocortisone to try to raise my blood pressure and help with my symptoms. He agreed seeing a dysautonomia doctor would be a good idea and put a referral in for me, although I am not sure if I will be seeing a general neurologist or someone who specializes in dysautonomia. I think they also want to test me for Addison's Disease but want to see how I do on the medication first. For now, I suppose I will wait for my upcoming appointment with that doctor and see where it goes from there. It is good to know that I could contact Dr. Yan-Go if they do not have the necessities to help me here. Thank you so much everyone. These last few days have really given me a better understanding for what's going on in my body. It's very frustrating and sometimes hard to cope with the symptoms but this is very helpful and has given me the support I needed to just keep going until I receive adequate help.
I would take them up on the Addisons test. Fludro at normal doses is not much of a "glucocorticoid" but it is partly so. It's probably best to test before taking it and they are wise to screen for Addison's (nice that they offered rather than you having to request this testing). Did they plan on just "spot-checking" your cortisol or were they offering an ACTH stimulation test or similar?
If you start the fludrocortisone before they test for Addisons, you will need to go back off of the fludro. for the ACTH stim test. Endos will often only take you off it 24-48 hours prior to the test, but I was advised by a dysautonomia specialist that this is actually NOT a sufficient length of time to get the fludrocortisone out of your system for accurate results. If you end up in the situation of having to go off the fludrocortisone for the ACTH stim test, I would recommend that you ask that a dysautonomia expert be consulted on the ideal length of time that you need to be off the fludro prior to the test.
Good luck with your treatment. My husband has seen Dr. Yan-Go, and was not happy with her, but you may have a different experience that may be better. She never ran any tests, except for two sleep studies, and diagnosed him with dysautonomia. She never even took his blood pressure, never did even the simplest tests, except watched him walk about five steps. She just looked at the previous cardiologist's notes and took an oral history, seated behind a typewriter stand. Dr. Yan-Go advised him to take 400 mg of magnesium oxide twice a day, take three Tums twice a day, do yoga, avoid alcohol, refined foods, low-fat protein, east small frequent meals, avoid hot showers, and placed him on Topamax and Ambien. She laster tried to switch him to Seraquel. Dr. Yan-Go advised him against going to the E.R., but would not give any instances when it would be appropriate to go. We had some very scary, sleepless nights when my husband felt horrible, and feared that he would not awake again. The stress of not knowing is worse than some of the symptoms.
You might want to see a good arrhythmia specialist to make sure that your symptoms aren't caused by other factors related to your heart. We absolutely loved Dr. Osamu Fujimura at UCLA Cardiac Arrhythmia Center (310) 206-2235. He really spent time listening to my spouse, considering every aspect, ran every test, including a holter monitor for a month,
Thanks to Dr. Fujimura, my husband stopped taking many of the meds that were doing more harm than good to him. Cedars Sinai had placed him on beta blockers, anti-depression meds, anti-psychotic meds, seizure meds, adrenal gland meds, etc. At one point he was taking about a dozen different pills a day. That year, my husband developed gall bladder stones, kidney stones, had his appendix removed, and found skin cancer.
Please let me know how it goes for you, and if you find any great dysautonomia doctors, please share the info. Thanks and be well!
ok here IS the answer/ i have the same exact problem. it took 58 yrs for a doctor to find out what was wrong.
my fainting / passing out spells they found out my heart stopped or at times got so slow it got down to 30 bpm; i had a very low pulse/ low blood pressure/ the'd tell me "Oh you just have an athletic heart beat, atheletes would die for your heart beat. you can do any exercise with no problems. yeah right, i'd get too tired. I was told thru-out my life time was, qoate " anemia - sinus bradycardia - tacycardia - low bld sugar - pcos - dhea - lupus - even it is attention, you just trying to get attention, its all in yer head, etc etc
I DO HAVE : GERD > Acid Reflux > I take Nexium
Neurocardigenic syncope > inderal
High/low blood pressure > Lisinopril
Fibro / chronic fatigue
T-Waves abnormal (heart)
anterial hemiblock( " )
but officially its called:
Autoanomic Immune System Dysfunction or neurocardiagenic reflex
my electronics in my brain short circuit and tell my heart to stop or slow down and bamm i would. my bp would drop at times too.
called >>> AISD not AIDS
Pacemaker IS the Answer:
i finally went to a heart specialist even though ALL test showed my heart & veins were ok >> he did a tilt test w/ IV substance to stress my heart and BOOM they found my problem after 30 min. when they did this my heart dropped to 33 bpm / BP was 50/20 and i passed out. wa-la i now have a pace maker > no more fainting spells i have more energy then ever -
TELL THE DR TO CHECK FOR IT BY DOING A TABLE TILT STREE TEST WITH IV MEDS TO STREE THE HEART TIL YOU GET TO THE POINT OF PASSING OUT. I BET THIS IS IT. KATHI
I wish a PM/ICD was my answer - I've had mine since Aug 09 and still passed out - even in the dr's office. They've had to reset my HR limits into the 50's & 60's - it's helped me from completely passing out; but still doesn't stop near syncope; they reset my rate response, which didn't help.
I've try increased fluids, salt, meds, compression, massage, avoiding triggers, tilt training helped for a few weeks then stopped working, any other suggestions?
WOW! I have so much enjoyed reading this post and responses!! I ahve been battling what have been worsening cases of fatigue, PVC's and now PAC's, syncope, weakness, GERD, etc. I have seen so many doctors that I just can't stand to see another one and have them tell me it's all in my head or if it hasn't killed you it can't be that bad. WHAT?!
Anyway, I was in the ER a few years ago and was having PVC's that came out of nowhere and the Dr. there was telling me to do some muscle squeezing to get my sympathetic system to get back online. Now, after reading this I am curious if it might be that I need to see a neurologist.
Recently I had an event monitor for a month and the cardiologist I was to see was out on leave so I saw another in his practice....GRRRRR!!!.....lest I digress, he didn't take me seriously, never even talked to me about my monitor results, mentioned casually that I have an EKG arrythmia but it's "nothing serious in and of itself, can be just one of those things."
So, now I am experiencing near fainting that comes out of nowhere. I will be standing or sitting, doesn't matter, just all of a sudden I feel weak and dizzy and like my heart is in my throat. When I recover I am nauseous and weak.
Anyway, I feel like maybe on here I might find some folks who understand what I'm going through. Why aren't cardiologists more aware? Seems like there are so many of us all over the country that they would think about it. I even suggested it might be hormonal in nature as it worsens around that time of the month and he used that as the quick copout by saying yeah, it could be but women complain of this stuff all the time and we never can figure it all out or do anything about it.
So what am I supposed to do? Sit around until I die from it or just have a very boring life as an invalid? ARGH!!!
Thanks for letting me pop on and vent! :) I will be coming back often to see if there are any updates!!!
Thank you again for all your posts, very helpful!
Beth, so sorry you're going through this; sometimes it helps to vent - I know I've kept in too much for too long and it's made me depressed.
I would ask for a copy of my tests, notes etc and take them to a new dr - or have them forwarded to a new dr. A word of caution - I've had a cardiologist & pcp unwilling to send my paperwork to a new dr because they have sensitive feelings or get their toes stepped on. I usually just send the former doc a request of records for personal use, then take them to the new dr and the new dr can then do what he/she wants with them
That sounds alot like me - I've had many drs either ignore me or tell me nothing is wrong even when fainting and hitting my head on a wall. It wasn't until I passed out driving and had an enormous amount of pvc's that I was sent to a cardiologist & ep and a tilt table test was suggested to find out what the cause of fainting/dizziness was.
I was told for 4 or 5 years my frequent pvc's sob cp and dizziness were nothing; turns out I have malignant heart arrythmia's with no known cause, when I passed out during my TTT my heart stopped and my bp tanked. It's been an avalance from there - needed a pacemaker/icd for v-tach/vfib episodes, Neurocardiogenic Syncope (NCS), Orthostatic Intolerance (OI), neuro suspects Lupus (SLE) found out recently my AIC glucose levels were too high no known cause - possible diabetes, developed peripheral neuropathy that is excruciatingly painful, and some other things that my brain isn't processing atm.
A cardiologist, neuro or EP can do a TTT, really any dr can, but that way you won't have to go from dr to dr - hopefully they find out what's wrong before you hurt yourself fainting. Be careful and a word of caution about driving with syncope - if they have this documented in medical files; a suggestion of no driving until you get a full workup, if you have an accident, in most states your insurance will not cover it.
First step is finding a good doctor you can trust, to find out what's wrong with you, find an effective treatment that works for your system - all of us are different and different things work for each of us.
Elimination and avoidance of triggers has become a way of life for me - my cardiologist told me to get used to it, I have these things for the rest of my life, I have to learn to cope the best way I can.
So, I know you know about "brain fog".. I found this thread in a google search for something completely different and could not even remember that I was the one who posted it until I read several responses... Here is my update:
I got a pacemaker almost one month ago. It feels good to know that my heart won't stop anymore but it doesn't seem to be helping any other symptoms. I continue to have worsening GI symptoms and I believe the meds they gave me for this are causing my extra queasiness, presyncopal symptoms and shaking. If I look up I lose my balance. If I turn I begin to lose my balance. I do think that the progression of my symptoms is neurologic. My endo said he can't see any endocrine reasons for my passing out but I know I have some issues because my cortisol is high, my seratonin is low (on and off of zoloft), my DHEA is high.. He thinks I may have narcolepsy so I have a neuro consult later this month.
I also need to see them to find out the meaning of my "brain dysfunction" from my EEG last December and the results of a sympathetic skin response test and heart rate variability test I just had. I thought I was going in for an EMG but that is what I was having instead. I am seeing a new neuro. I hope he will give me the time of day because life feels pretty sucky right now. I am mostly stuck at home because I don't have the energy to stand or do much for very long. I have to eat but eating hurts. I am tired, lethargic, frustrated.. I am still trying to exercise on my exercise bike but my abdomen hurts so it's hard to do much. Plus, I am getting fatigued more easily. So, there's my update...
Thank you to everyone for all of your support. I cannot remember if I looked at all those links in the past so I will be going through them now. If anyone has any new ideas for me I would love to hear them.
My thoughts are about Sjogren's. I was tested by 5 different Dr.s over a period of 5 years and finally someone mentioned that some positive Sjogren's patients don't show up positive, but a bioposy is 100% accurate. So I had a bioposy and I'am positive. You have many symptoms. Goodluck. : )
Bottom line - Ambien used to help me sleep due to palpitations has been reported to cause reflux discomfort (GERD) -
I decided to stop ambien and not only did the pain disappear but no more PVC's!!!!! My doctor was pleased with my discovery.... I'll trade a restless night sleep for a palpitation/pain free situation any day. Hope this information helps some of you there.....
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